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withholding information regarding my son

My son had an appointment with his occupational therapist today. Let's just say I'm not happy. She tried something new called integrated listening system on him. I've never seen him so calm and focused! But she said the machine to do it is $1700. He's seen this ot 4 times since his diagnosis in November so he doesn't go enough to really benefit from it :(
We were talking about the difficulties he has been having and I told her an eye doctor diagnosed him with tracking problems and gave him glasses. The glasses really bother his face and its hard to get him to wear them. She says to bribe him! Umm... this would be part of the sensory issues you are supposed to be guiding me through to help teach him how to cope. And that's your answer?
And then it gets worse. She says she knew he had tracking problems, visual processing problems (which I knew from the eye doctor but hadn't mentioned), auditory processing problems, fine motor and gross motor delays, and muscle weakness. She mentioned more too but I don't remember what. She had never mentioned this stuff to me! I feel like I should be informed of my son's challenges so we can work together towards a solution.
I had talked to a local tutor who also knows a lot about sensory processing a few weeks back so I did know all of this from her but it really makes me mad the ot did not share that information about my son.
Now the thing that has everybody baffled is he has mastered the upper level skills but not the lower level. How he did that is beyond our understanding. Like he can write really well for a 5 year old in print and cursive but he can't color in the lines or draw much. He can write an o but a circle gives him trouble (despite it being the same thing!). He has very poor visual memory. He can't look at a shape then draw it on a paper when it's taken away. But he's reading at a 3rd grade level. How did he get there with visual problems? Yeah we don't get it either. And auditory is the same way. He's not processing what he hears or sees correctly. Nor can he handle a lot of light or noise. But somehow he has managed to gain these upper level skills and has mastered 2nd grade concepts across the board.
Physically he's a mess. He can't skip. He can't catch a ball. He didn't start throwing a ball overhand until 4 1/2. He doesn't have enough upper body strength to pull himself around on a scooter board or do a wheelbarrow race. He's the slowest runner in tee ball even though he's almost 6 and a couple of girls just turned 4. He can't jump rope. Somersault are hard for him. He definitively can't dribble a ball.
Would you be upset with the ot for not telling you everything that was going on?

I'd be upset that she didn't tell me. The whole point of the therapy is to help him and I would think part of that would be helping him at home so if you knew what was going on you would understand better on what needs to be done and ways you can help or support what she is doing.

It would also be helpful so that his teachers would know if he goes to school.

Did she perhaps think that you already knew? I'm a speech therapist - when I worked in an outpatient clinic, I typically got kids after they had a battery of tests and evaluations by M.D.'s. Parents typically came to me for help with things that they already knew their child was struggling with. Now I work in Early Intervention - so I'm always the one that has to give the bad news first :(

I'd be upset that she didn't tell me. The whole point of the therapy is to help him and I would think part of that would be helping him at home so if you knew what was going on you would understand better on what needs to be done and ways you can help or support what she is doing.

It would also be helpful so that his teachers would know if he goes to school.

I think it's important for all information to be shared regardless of whether you know it already or not. I would brig it up to her that you felt what she told you should have been shared as had you not already known about them, you would still be struggling to find ways to work with your kiddo.

As for the glasses, if he needs them, maybe they need to be adjusted so they rest more comfortably on his face. Have you gone back to the eye doctor to have him look to see if they need adjusted? They can change the Nose pads, adjust to the parts that goes behind the ears, etc. :) you may have already done this, however just in case.

Lisa, you are a great advocate for J, there is not doubt in my mind that you will figure out multiple solutions.

He is homeschooled so I am his teacher. We spend an hour a day working on therapies. It's killing me. I'm so tired of it! But it has to be done.

Quoting akgrear:

I'd be upset that she didn't tell me. The whole point of the therapy is to help him and I would think part of that would be helping him at home so if you knew what was going on you would understand better on what needs to be done and ways you can help or support what she is doing.

It would also be helpful so that his teachers would know if he goes to school.

We use a charter homeschool and when we went through the iep process they asked her to evaluate his fine motor, gross motor, and physical skills. Her report says they were fine.

Quoting mysweet1s:

Did she perhaps think that you already knew? I'm a speech therapist - when I worked in an outpatient clinic, I typically got kids after they had a battery of tests and evaluations by M.D.'s. Parents typically came to me for help with things that they already knew their child was struggling with. Now I work in Early Intervention - so I'm always the one that has to give the bad news first :(

Thanks I'm not feeling like such a good advocate right now. I'm feeling like nothing I do is ever enough.
I will ask his eye doctor at his appointment if anything can be done.

Quoting grneyedormom:

I think it's important for all information to be shared regardless of whether you know it already or not. I would brig it up to her that you felt what she told you should have been shared as had you not already known about them, you would still be struggling to find ways to work with your kiddo.

As for the glasses, if he needs them, maybe they need to be adjusted so they rest more comfortably on his face. Have you gone back to the eye doctor to have him look to see if they need adjusted? They can change the Nose pads, adjust to the parts that goes behind the ears, etc. :) you may have already done this, however just in case.

Lisa, you are a great advocate for J, there is not doubt in my mind that you will figure out multiple solutions.

My DS has SPD too. I would be furious if she didn't share what she knew. It's different if she is making a diagnosis, like I know most therapists won't say if they think a child has Autism for liability reasons. But tangible symptoms that can worked on are completely different.

As a side, there are eye exercises that can be done to improve tracking. I know the headsets are $250 for the listening therapy, but I think there are cheaper listening programs than $1,700.

Good luck, I know it can be hard to find therapists that understand SPD, but it sounds like you may need a new one or at least make her communicate more

Yes his eye doctor had me buy a book with activities to improve tracking so we are working on that in addition to the glasses. His OT doesn't think he should have the glasses at all but oh well, she's not an eye doctor. The one he sees is very knowlegable and specializes in tracking problems, astigmatisms, etc. I'll trust his judgement.

I'll look into the listening systems. I haven't had a chance yet. I was so overwhelmened last night I just locked myself in the bathroom and cried. Today I can try to find solutions.

I know he needs a new therapist but I can't find one! The next closest one is over 2 hours away and my insurance won't cover them. I live in a rural area. The insurance made an exception for this one because there isn't another one within 100 miles.

Quoting e-doolittle:

My DS has SPD too. I would be furious if she didn't share what she knew. It's different if she is making a diagnosis, like I know most therapists won't say if they think a child has Autism for liability reasons. But tangible symptoms that can worked on are completely different.

As a side, there are eye exercises that can be done to improve tracking. I know the headsets are $250 for the listening therapy, but I think there are cheaper listening programs than $1,700.

Good luck, I know it can be hard to find therapists that understand SPD, but it sounds like you may need a new one or at least make her communicate more

Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love. ~Mildred B. Vermont

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